Are the stages shorter? Or is the pain and blame game twofold? How is this stupid forsaken process different? If I stop and think about it I will cry and regrouping will be a b*tch that may require medical intervention for me via some happy pills that cure anxiety and perhaps some therapeutic liquor on especially difficult days. I am the mom, the primary caretaker, the one who felt their first movements and I have to buck up because I don't have time for the pity party, I have to keep it together because my 3 babies depend on me. I don't think its right that I should have to go through this forsaken process more than once, if at all. Shouldn't a parent get a pass if one of her kids already has a disability? And why do any of my kids need to have a disability? Why couldn't that have skipped our home?
Apple has been receiving physical therapy since she was three months old. She's logged over 150 PT hours over that time. That's hard work for a baby. She's now also receiving occupational and speech therapies. She rolled over when she was seven months old, crawled at 11 months, and started walking at 18 months. At 20 months she's only clearly speaking 5 words and 5 approximations but her receptive skills are much better than that. Needless to say she has not had your typical development. What is causing it? Why can't she be a normal developing baby? Her twin is developing at a "normal or typical" schedule. Is it all because she had torticollis? Is there something else causing all of this and what else should I be doing?
This is so difficult and yet it is in a way easier to process because we've been through this before with my son. So I now know to be knowledgeable, be proactive, to advocate for her. And I have been. She is receiving all the services she needs to develop and now the more elusive diagnosis is the only frustration. Let's not discuss heart ache. I doubt I can ever fully explain that. It might be a have to know one to understand it fully. The pain and guilty-- those feelings can't be shared.
I don't think we're dealing with Autism here. This isn't denial. I've been filling out the MCHAT questionnaire pretty regularly for her. I even ask her therapists if they see any symptoms or signs. Apple is clearly a social child, she makes eye contact, sure she does this weird thing where she point with her middle finger, but she also has a pincer grip and is showing a left hand preference. She's a sensory seeker but it is age appropriate. She plays well with other kids her age, she plays well with her siblings, she's interested in other kids and her environment. Despite her gross motor delays and suspected gross motor planning problems, both her early intervention team and us (the parents) do not see any social delays. Nor do we notice any cognitive delays. It is so frustrating!
The worst is not knowing. You can only fear the unknown. All very trite and yet so true. It is a ticking time bomb because the undiagnosed can have a really bad name. But I still want to know, I've never been a coward. I've always been me-- aggressive and determined. So I want to know this unknown beast. I want to know its name and its everything. Because there is no way it's going to have my baby without a fight. I'm not going down without a fight. So whatever the motherf*ing name these symptoms all add up to, it's not going to win. My baby, all three of my babies are going to have a normal childhood and dammit they're going to have a normal life. It's just going to be our version of "normal" and maybe I'll shed plenty of tears throughout this battle, maybe the hope and dreams will take a beating, but this mofo isn't going to win, not in our house. Please God give me the energy and the faith to keep on going, because that's all I can control.
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